Bonding in Boston: Our Experience at the NMO Awareness Gala

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by Candice Galvan |

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neuromyelitis optica spectrum disorder | Neuromyelitis News | A graphic depicting a person doing yoga on a cliff before the moon.

March 25 was a day I won’t soon forget. My 13-year-old daughter, Bella, and I jetted off to Boston to attend The Sumaira Foundation’s 5th Annual NMO Awareness Gala at the Mandarin Oriental Hotel the following day.

The trip took a few years of planning and preparation, including surviving the COVID-19 pandemic. This was also our first mother-daughter trip, so to say we were excited is an understatement.

Although Bella was diagnosed with neuromyelitis optica (NMO) in 2017, we had only met a few NMO patients and caregivers in person since then. The weekend in Boston was an opportunity to connect with others, give hugs for the first time, and bond with one another. I knew the weekend would be special, but I had no idea just how special until we arrived.

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The days leading up to our trip included a trip to the hair salon for some highlights in Bella’s hair, a sister trip to the nail salon, and a shopping adventure for elegant gala accessories. I felt confident that I had thought of everything. We were ready to go!

Arriving safely in Boston was a relief, and the city reminded me a lot of my hometown of Denver. We were given a brief tour of Boston on our way to the hotel, and we learned that not only are there many healthcare facilities, but also quite a few colleges, including the Massachusetts Institute of Technology and Harvard University.

Our hotel was amazing. It overlooked the finish line of the Boston Marathon, which will take place later this month, and was surrounded by shops and people. Bella and I wasted no time in familiarizing ourselves with our surroundings before attending the first ambassador dinner held by The Sumaira Foundation (TSF). The dinner allowed NMO patients and their families to meet, mingle, and bond before the gala.

NMO Awareness Gala | Neuromyelitis News | Bella Damian-Ortiz and Candice Galvan meet Sumaira Ahmed in person for the first time at The Sumaira Foundation's ambassador dinner. The three women are dressed up, smiling, and posing in front of a wall of pink flowers.

From left, Sumaira Ahmed, Bella Damian-Ortiz, and columnist Candice Galvan attend The Sumaira Foundation’s first ambassador dinner on March 25. (Courtesy of Candice Galvan)

When we arrived at the dinner, my anxiety was through the roof, but it disappeared the instant we opened the door and heard the most energetic and bubbly voice yell, “Bella!” It was TSF founder Sumaira Ahmed, who was beaming with excitement.

After sharing hugs with Sumaira, we had the opportunity to meet NMO patient and junior TSF ambassador Nell Choi, 13, who, like Bella, was diagnosed at just 9 years old. Nell wrote the book “My Hospital Story,” which details her journey with NMO. Nell and Bella formed an instant bond, and the smiles on their faces meant the world to me.

As the evening went on, we bonded, laughed, cried, hugged, shared our NMO journeys, and talked about how the foundation has impacted our lives and brought us all together. I had never been in a room with so many people who understood exactly what Bella was going through. We had waited a long time for this evening, and it was perfect. One building near the hotel was even lit up pink to commemorate the gala and TSF.

NMO Awareness Gala | Neuromyelitis News | Candice Galvan, Bella Damian-Ortiz, and Nella Choi smile for a selfie at the NMO Awareness Gala. They are dressed up and adorned in fun accessories, and a crowd of people dances behind them.

From left, columnist Candice Galvan, Bella Damian-Ortiz, and Nella Choi are all smiles at The Sumaira Foundation’s 5th Annual NMO Awareness Gala on March 26. (Courtesy of Candice Galvan)

Getting ready for the gala the next day was so fun. Bella got her hair and makeup done at a local salon, and she looked like a princess when she was done. However, we noticed that because we were walking around so much, Bella’s feet were swollen, causing her shoes to cut into her feet. But even though Bella was in pain, her smile never faded, and she danced the night away!

A few highlights from our evening at the gala included seeing the premiere of the foundation’s annual impact video, which featured both Bella and Nell and their journeys with NMO, and ending the night singing and dancing to some of my favorite Journey and Backstreet Boys songs with our NMO family and not a care in the world. The sense of community, love, support, and understanding in the room was incredible.

The Sumaira Foundation had an ambitious fundraising goal of $250,000 to help further research for a cure for NMO. According to the foundation’s gala recap, 375 guests attended, including 22 patients from 15 cities in two countries, and $220,000 was raised for research. For Bella and I, it was a successful mother-daughter weekend that resulted in a lifetime of memories.

Note: Neuromyelitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health providers with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).


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